Rare disease strategy needed, says Simon Lono
A spokesperson for a group representing people with rare disorders wants the province to develop a strategy to better meet the needs of patients suffering with rare conditions.
Simon Lono is with the Canadian Association for Rare Disorders. He is also seeking the Liberal nomination in Signal Hill-Quidi Vidi.
The whole process of the medical system in Canada in the first place was to ensure that nobody had to go bankrupt because they got sick.- Simon Lono, the Canadian Association for Rare Disorders
Lono said there are approximately 8,000 diseases that are classified as rare disorders and roughly 25 per cent of the population will suffer from one or more of them.
"The problem with the medical system, particularly the medical system in Newfoundland, is that a doctor might see only one [instance of a rare disorder] every so often," Lono said.
"We have a medical system that is very good at low-hanging fruit. If you go in with a heart-attack, you go in with a broken leg, the system is very good at handling you because you are a common problem," he said.
"But for rare disorders, the system tends to handle these patients all as one-offs."
Lono referenced a recent CBC story about a family on the Northern Peninsula, struggling to keep up with their toddler's medical expenses. He said cost is a chronic problem for those dealing with a rare disease.
"The whole process of the medical system in Canada in the first place was to ensure that nobody had to go bankrupt because they got sick," he said.
"And yet that is what government is telling these people — 'We want you to give up your jobs, we want you to go on income support and then we'll take care of you' — and that's simply not fair."
Lono wants to see a rare disorder office established that can coordinate and manage individual cases.
"There should be a rare disorder strategy so that once you're diagnosed, we can put you into a system so we can take care of the particular problems that you have," he said.